Dealing with SMA in the Age of Social Media
Last updated: January 2022
This article is more for parents of younger children who have SMA. There are a lot of Facebook groups revolving around SMA. I don’t actively post in these groups, however, I do find them very informative.
There is a lot of information to be found in these groups. I want to encourage everyone to join and add your two cents when you see fit.
Social media and posting pictures
My issue and it’s an issue with a lot of us older people with SMA is the pictures that parents post of their children. I understand that this is a scary time for you and your family.
I am sure you have lots of questions and are looking for first-hand experiences. However, remember your child will grow up one day.
I realize the possibility of the picture your posting resurfacing years later to embarrass your child is slim. Ask yourself would you be happy to know your parents posted a picture of you in a compromised situation?
Living with this disease can be challenging enough. I think sometimes parents are overwhelmed and are not thinking clearly when they post pictures of their children. I want to encourage you though to really ask yourself if posting a picture is really going to get you a better answer. Probably not.
Parents respecting privacy
Luckily I grew up without social media. I have been grateful that my parents always respected my privacy. As your children grow older, include them in these conversations.
Ask them for their feelings on what is shared about them online. Remember this disease is a part of them, not you. I know that may sound harsh but they are the ones who need to navigate the feelings of what is shared about them.
Permission for photos and videos to be shared
I went to a clinic in a Children’s Hospital by my home. I was in my early 20’s when I was asked if they could record me walking and doing physical therapy. My first question was how would this be used?
I was told it would be used for student doctors. My answer was a flat no. I understand that student doctors need to learn. The thought of a video of me floating around made me uncomfortable.
The physical therapist gave me some pushback. This annoyed me even more. I reminded him this is my body not his and if I didn’t want it recorded to be displayed for students, that was my right.
How have others dealt with oversharing online?
I feel this way for your children that you post pictures of. They are too young to properly give you their feelings. That said, I imagine years from now they wouldn’t be happy with being on display for others to see. So please take this into consideration when you feel the need to post compromising pictures of your children online.
Are there any younger adults who want to chime in on this subject? I am 44. Social media wasn’t a thing until I was in my 30’s. People in their 20’s probably had to deal with their parents oversharing online. How have you dealt with this?
Have you shared your SMA diagnosis story with us yet?